Reccurrence?..Waiting on biopsy results

Posted by meme5 @meme5, Aug 24, 2022

I had invasive lobular carcinoma stage 2B, 2.1 cm tumor with 3 positive lymph nodes in 2013 at the age of 65. Had double mastectomy with reconstruction, silicone implants, did 4 rounds of A/C and 4 rounds of taxotere. Then 5 years of Famara. Always had great reports until I wound up in the ER this year, 2022 in April for a stomach bug I caught while traveling. They did a CT scan in ER of abdomen area and said I had pancolitis. Put me on flagyl/Cipro and I recovered.
The CT also showed liver cysts which I have had and known about for at least 14 years. No problems with them at all. That led to an MRI, liver biopsy (inconclusive..not enough tissue obtained) ultrasound, endoscopy and pet scan. All my organs look fine but the pet scan had an uptake of 7.2 on a lymph node in hepa porta (not in the liver but near it). So this week I had an upper endoscopy ultrasound where they were able to obtain tissue samples of the lymph node in question. The Surgeon who performed it told me afterwards that the lymph node is not connected to any other organ. Just sitting there by itself and encased. It is both fluid filled and solid. I also had tumor markers done. Two came back normal and two came back slightly elevated. My oncologist does not do tumor markers because he says they are unreliable. They were ordered by the surgeon. The surgeons report said suspicious for adenocarcinoma from the breast!
So here I sit waiting for results. They will call me but it takes 3-5 days. I am a nervous mess.
I am trying to stay busy, read and meditate. Not knowing what is next is making my heart race and stomach hurt.
I am 74 now and in great health. Walk 5 times a week, volunteer, read , etc but am divorced and live alone near my daughter and her family.
I really don’t want to do this cancer shit again and I am scared. Have any of you had cancer scares that turned out to be nothing? Or if your cancer returned how did you deal with it?
I feel overwhelmed!

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As hard as it is, I'd try to wait until my oncologist has valid biopsy results in hand. My oncologist does do tumor marker tests but also cautions that they aren't definitive of anything as several things, including inflammation anywhere in the body, can trigger a bobble upward. He would be interested in any severe increase or continued upward trend line over a period of time but that's about the sum of it as far as I understand.

I have two friends who had surgery because doctors insisted that lumps they saw in tests were clearly malignant tumors. One had a lumpectomy at a top hospital in NYC and post-surgery biopsy found that the tissue removed was not cancerous. The other had surgery at a top cancer facility, with tumors removed from kidney and liver. Both of which were later determined to be benign by testing at the national registry. And my friend had post-surgery complications and infection. The fact that a biopsy could have ruled out the 'need' for surgery still angers both people.

That doesn't directly answer your question but the surgeon might not have the expertise to identify or characterize an adenocarcinoma. Or is guessing...he had to write something as a reason for testing but if cancer is not his specialty, what he writes might not be appropriate either.

If you cab, get your ducks in a row so you can get another opinion, or two. From oncologists. Making the appointment(s) with is something proactive that you can do and having them 'just in case' can help a little to feel empowered. And canceling a medical appointment a day or two early is easy enough.

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Lobular is hard to catch with imaging. I have a friend who had a recurrence found as a result of an abdominal scan for something else entirely. She considers herself lucky that it was found that way.

Your lymph node may be fine. If it is not, then that stomach bug was very helpful in bringing this to medical attention.

Please let us know the results! Hoping for good news for you.

ps none of my oncologists do blood markers

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Thank you both for your responses. I did find it odd that a gastroenterologist (highly specialized in his field) who performed the biopsy would make such a remark about adenocarcinoma. He is not an oncologist! But yes he did have to write something didn’t he.
It does seem odd to me that this lymph node is not attached to any organ, totally encased and just “tucked away” as the Dr put it would be cancer. I do know that the liver biopsy I had earlier stated that what they saw was it was just inflammation with mucus and blood mixed in but then it stated the specimen was unsatisfactory. That report also stated no malignancy found. But since there was uptake on the pet scan in that area my oncologist wanted me to have the biopsy redone through an ultrasound.
I hope biopsy results are at least correct this time, I am beginning to not trust many drs.

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Of course you feel overwhelmed. We all live with this fear unconsciously if not consciously. “Suspicious” for BC because it’s in your history; no evidence. It’s tough to wait on results but in the meantime start your research into an oncologist In the event that one is needed; we should all have one in our contacts. I’ll be thinking of you. Keep us posted 🤍

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I do have an oncologist.. same one for five years and had another for 5 years in another state before I moved here. I do trust him as he is the one who was not satisfied with the liver biopsy result being unsatisfactory specimen and concern on the SUV uptake on my pet scan. He also got me in very quickly to the teaching hospital nearby for the ultrasound endoscopy biopsy I had this week. Less than two week turnaround. His personality is a bit flighty and not terribly calm but he came highly recommended as the best in my town with over 25 years experience. But if need be I would get a second opinion from Shands in Jax.
Thank you for your support and good wishes.

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I just received my pathology report from my biopsy.
It states the final diagnosis is: Atypical
Is that good or bad? Do I have cancer or not?
I think it means that the area is not cancer but could become in the future or maybe not.
Please help me understand!

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@meme5

I just received my pathology report from my biopsy.
It states the final diagnosis is: Atypical
Is that good or bad? Do I have cancer or not?
I think it means that the area is not cancer but could become in the future or maybe not.
Please help me understand!

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@meme5 I read and re-read your original post and follow up. On what organ was the biopsy performed? Was this a liver biopsy? Tissue from the lymph node? Is there a description in the pathology report before the diagnosis? What did your doctor say? It can be very nerve wracking and scary to read a pathology report before talking with your doctor who will explain the results to you.

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@naturegirl5

@meme5 I read and re-read your original post and follow up. On what organ was the biopsy performed? Was this a liver biopsy? Tissue from the lymph node? Is there a description in the pathology report before the diagnosis? What did your doctor say? It can be very nerve wracking and scary to read a pathology report before talking with your doctor who will explain the results to you.

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The biopsy was done on a lymph node in the hepa porta area ( I think that is a strand of lymph area beneath but not in the liver.
There is a description in the path report that states a 5cm mass in the porta hepatic area cystic and solid.
I have not heard from the Dr about this biopsy report. I have an appt next week. The hospital where this was done was supposed to call me with the results before they showed up in My Chart but I have had no call yet and the biopsy report showed up in my chart about an hour ago.
I definitely will discuss with my oncologist. But I was expecting a malignancy cells found report so I am holding on to this maybe being just a watch and wait.

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@meme5

I just received my pathology report from my biopsy.
It states the final diagnosis is: Atypical
Is that good or bad? Do I have cancer or not?
I think it means that the area is not cancer but could become in the future or maybe not.
Please help me understand!

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Boy, talk about helpful, huh? I'd be wondering exactly what that portends too but, unless the description (not the one-word label of atypical) words that suggested cancer, I'd at least be somewhat relaxed until I could get more answers. There are 'artifacts' in most of our bodies that are unimportant or signs that the immune system tackled a problem we didn't even know we had and dealt with it. [My doctor mom used to remind us children of how 'smart' the body is and to respect its few needs like good diet, etc.]

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@callalloo

Boy, talk about helpful, huh? I'd be wondering exactly what that portends too but, unless the description (not the one-word label of atypical) words that suggested cancer, I'd at least be somewhat relaxed until I could get more answers. There are 'artifacts' in most of our bodies that are unimportant or signs that the immune system tackled a problem we didn't even know we had and dealt with it. [My doctor mom used to remind us children of how 'smart' the body is and to respect its few needs like good diet, etc.]

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A second report I found as a PDF states “The specimen examined has a rare cluster of atypical cells of nonspecific origin; resampling and clinical imaging correlation recommended.
I guess that means run more scans in the future to compare or watch carefully. Until all this started in April with my trip to the ER for a stomach bug they had no scans to compare this too as I have had no issues whatsoever.
Hopefully my oncologist will be keeping an eye on it.
This could have been there for a very long time and because I have had no health issues it was not noticed.
For now I am grateful that I did not read the word malignant like I did when I was diagnosed with breast cancer in 2013.

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